Sometime early last week Brooke wrote:
Some of you may remember a blog I wrote a number of months ago about finding my groove in breathing—that lasted I think about 5 minutes in a 20-minute trial of breathing off the vent, where the other 15 minutes were very difficult. I think I compared those five minutes to breathing in Buddhist meditation; that all-too-brief time was extraordinary. I’ve had a few other periods of in-the-groove breathing that approached that since then, but they’ve been sporadic, and often punctuated with episodes of anxiety—something like what you experience when you think you’re drowning. Well, this may sound like boasting (and I have to say that it is indeed the result of a lot of hard work and concentration), but today I reached a new level of in-the-groove breathing.
It’s been coming for a week or so and started last Sunday, when I suddenly realized that I had no anxiety about breathing off the vent from the beginning of the session to the end, an hour and fifteen minutes later. Then on Monday I wondered if I could repeat the same exercise with a different therapist—lo and behold, I could. In fact, I was able to breathe without any anxiety, in the groove, from the very start of the morning session, for an hour and 45 minutes, and in the same way, in the afternoon, for another hour and a half, making a grand total of three and a quarter hours for the day. What was marvelous about this was how all the breathing work I’ve had to do since the earlier blog has paid off—like any other exercise, no pain no gain, but there’s been plenty of challenge here. It’s not exactly pain that one has to endure in order to have gain, but rather overwhelming and utterly visceral anxiety, when you fear you can’t breathe even though you know the fear is irrational. The fear is real, but the gain, when it comes, is tremendously exciting. Just the same, there’s still a long way to go before you’re really entirely off the vent.
A day or so later, Peggy wrote:
Tonight, after a perfectly beautiful day punctuated by rainstorms and wind, we were having dinner in Brooke’s hospital room with a friend, a doctor who is Brooke’s spinal-cord mentor, eating a delectable dinner of trout. All of sudden and without any warning, the power went out—lightning, it later turned out, had hit a power substation, though of course we didn’t know that at the time. The lights went out, the music went off, and Brooke’s big air-flow bed lost power and began to deflate. The ventilator flickered for just a second as the emergency backup power came on, but—and this is the symptom of progress—Brooke said he had no anxiety at all about whether he would be able to breathe if the backup power didn’t work.
That was several days ago. The reward? The head respiratory therapist announced the next morning that it would no longer be necessary to have a respiratory therapist sit in Brooke’s room all the time while he’s doing his off-the-vent trials; they have enough confidence that Brooke can breathe on his own safely for at least the intervals between times when they check on him every fifteen minutes—that is, Brooke’s out of the critical stage when they have to watch him all the time. (Don’t worry, there’s an alarm system too, just in case.) The central element here is overcoming that gut-level anxiety when you don’t know where your next breath is coming from; now he knows it’ll come from him.
A few days later, we wrote together, still thinking about breathing:
One of the things you discover when you spend a long time in a healthcare facility is how many different people are involved in your care: nurses, aides, speech therapists, physical therapists, occupational therapists, every sort of specialty. We tried to guess a while ago how many different nurses had taken care of Brooke over the last seven months: we came up with a figure in the mid-hundreds—that many different faces, different personalities, and well-trained pairs of hands.
But in every specialty, despite the same training, they’re all different. Brooke has been very, very interested in the lives of the different caregivers; he is enormously interested in their stories, their hardships in their lives, what makes them tick. These are the people who are all around him, every day, and it’s a completely new world. He loves all this contact with new people, and they seem to love him—and are often astonished that a patient actually takes a genuine personal interest in them. Sometimes, the interest grows even stronger and a deep bond forms, even though it is between patient and professional, caregiver and one-in-need-of-care.
Sometimes, though rarely, it’s the other way around—the vibes aren’t so good, there’s a little lack of confidence, it just isn’t a good match. There’ve been only a tiny handful of cases in which Brooke simply hasn’t liked the people assigned to his care—barely even a handful, out of the hundreds who have taken care of him. He doesn’t complain much, but he can feel it.
With breathing, because the respiratory therapists make such a difference to his life and are so closely associated with those visceral fears, he is very, very sensitive to differences and clearly has his favorites—the ones for whom he performs best, the ones who succeed best in quelling the irrational fears. There are some who seem to be able to energize his breathing efforts, who coach in just the right way or understand his need for silence while he’s concentrating on this, or whose sheer presence is comforting while he’s doing something really hard. But there are also a few at the other end of the scale—where there isn’t such a great degree of mutual sympathy and understanding, where his anxiety wells up most greatly. Brooke doesn’t like to play favorites, but in any situation where there’s such intimate, ongoing contact as health care, it’s hard not to recognize that you resonate better with some people than others.
One of these others among the respiratory therapists was on a couple of days ago, indeed one of the ones he’s had the most trouble in working with. Peggy’d also had a little bit of unspoken friction with her, cross about the way the trach mask had been placed on a couple of occasions. Brooke had been uneasy. She’d cut off the trials early a few times, a sign that something wasn’t working. But somehow today, when she disconnected the vent tubing and covered the opening of Brooke’s trach with the mask that blows warmed and humidified room air past it—this is the start of the off-the-vent trials—he just relaxed. She smiled. He breathed. She smiled. He breathed again and again, and went on for an hour and forty-five minutes. Not only that, but toward the end he pulled in some of the biggest volumes so far—over 400, yet. Now she wasn’t just smiling but completely elated, and when she was finished hooking him back up to the vent, she almost ran down the hall to tell the other respiratory therapists what a huge success he’d had—or rather, they’d had.
Back in the room later on, she was telling Peggy about it, still with the new smile on her face. She told me again how excited she was by what Brooke had been able to do, and added, with a wonderful twist of whimsy, and he was even able to do it with me. She’d known all along that even though Brooke doesn’t like to play favorites, she wasn’t one of the therapists with whom he really resonates, so for her this was a special victory. And for Brooke too—not just because it meant stronger breathing, but because it was a way of recognizing the difficulty of the jobs of therapists of all sorts, OTs, PTs, respiratory therapists, even the physicians, who can’t as easily trade on mutual resonance in personalities with a given patient to make these hard jobs easier. Celebrating the people he’s really loved is easy; it’s much harder to think openly about the ones for whom it hasn’t been this way. Brooke and I both know this from years of teaching, of course—there are some students who are on exactly the same wavelength and who remain favorites over the years, some with whom you never quite connect—but in sustained health care (he’s spent seven and a half months in hospitals, so far) these unavoidable differences play an even greater role.
Brooke sometimes repeats a Quaker saying that Peggy learned as a child, “There is that of God in every man.” You don’t have to be religious to think this; you just have to look beyond your initial antipathies, mistrusts, even animosities to see what’s still human and wonderful in somebody else, and this respiratory therapist’s magical smile let us pierce through to that. I think too that she could see that in us, both our delight and a kind of apology for the distance we’d let creep in.